Have you ever wondered what it's like to be in a power outage with a special needs child? Grab a cup of coffee, settle into your chair, and listen while I tell you about my day.
The weather forecasters were pretty off on their timing of the winter storm starting, and I was hopeful that they'd be off on accumulations and temperature drops too. The day started off great. I worked on sanding down my future crafty spot off and on--a beautiful butcher block island that kept oozing a mysterious sticky resin left behind by previous owners & ultimately making it a junk spot. I did dishes, folded clothes & put them away, and as time went on I was feeling increasingly confident that we would keep our power on. So confident that I washed our winter coats. Roo spilled milk all over hers yesterday & I normally wash them all when I have to wash one.
Things were going well. Everybody was doing what they wanted. I proclaimed myself a maid for the day and informed my husband that he was now a manny (male nanny). The sink had just been loaded with more dishes--I'm not lucky enough to have a dishwasher (hired or electric), the dryer was ending it's last cycle, and the coats were in the washer waiting for the dryer. Roo was occupied watching a favorite cartoon and Terry was outside shoveling snow.
The power went out.
...
The power came on.
.....
The power went out again, and this time it stayed off. And stayed off. And stayed off.
Before I go any farther, I need to tell you that my husband is an amazing man. He's the kind of man who pulls over to help people when they have a flat, not worrying that it could all just be a setup. He's the one who takes Roo back to the OR when she needs a procedure, because mommy just can't bear to watch her child be put to sleep, even if it is just anesthesia. Today was not his best day. I often think that he would sleep better/handle certain stresses better if he would take an antidepressant. In fact, I think that if he went on medication, I would be able to take less. ;) regardless of the way this day played out, this is not his typical character.
Roo was stunned, in awe that no matter how many times she flipped the switch, the lights would not come back on. I took out an old bill to report our outage and she brought me my debit card from the desk. The look on her face was priceless, "Pay it, Mommy, quick!" :)) It was awesome.
My husband came inside from shoveling and it wasn't long before he started panicking. He wanted to go somewhere. He was afraid that the power would be out for days and we would be stuck here in sub-zero weather. I had prepared for this storm. I had a plan. I was not abandoning 2 guinea pigs & a cat, packing up every single stinking thing that my daughter would need somewhere else, packing up everything that he & I would need when the risk of traveling the roads was greater than the risk of staying home. We had groceries, we have a gas stove that doesn't require electricity to stay lit, and with this being a small home, that would probably keep us warm enough. Even the paranoid part of me was okay because being home meant keeping the house warmer than it would be if we left, and the pipes would have less chance of freezing annnnddd I know that there is an increased risk of CO2 poisoning when you heat your home with the oven, but we also have working, battery operated fire & CO2 alarms. In my mind, we were good.
Then my brother-in-law called and said that we could all camp out at his house if we wanted to and that he had a spare room. From a social perspective, this was ideal, but even in fair weather, it takes about 20 minutes to get to his house and the heavy wet snow, combined with the horrible risk of being stranded, didn't make it worth it... to me. Terry was mad. He was freaking out, and mad. I said, give it a couple of more hours. I'm at least fixing supper and then we'll decide what to do.
Roo is ultra-sensitive to emotions. I don't quite understand how she can sometimes perceive a group of happy laughing people as funny one time, and terrifying the next, but we generally just take it as it comes. It sounds stupid, but when I sense her stressing I try to put out a calm, tranquil signal. I must be halfway okay at this because I've been called "the baby whisperer" on more than one occasion over the years. Anyway, Roo is crying because daddy is mad and mommy is irritated and -- ya know what, he was a jerk and I stood my ground. You don't need to know the details, the words that were said.. I'm not airing out the laundry. My point is, our kids play off our emotions, and if we can't hold it together, how can we expect them to?
There were lots of crying spells. Once when I told Roo she would have to take a break from the Ipad because we needed to make sure we didn't run out of battery life. Another time was when I broke down sobbing over the phone with my mother, because I felt like the weight of world was on my shoulders. Another offer was made to "rescue us" --a very generous, selfless, four wheel drive offer-- and I turned it down because we didn't need rescued. Then a state of emergency was declared.. that was the whole purpose of my mom calling and I answered the phone ready to tell someone off because no one was listening to me that I didn't want to go anywhere! "Is it a blizzard?!" I asked my mother. "No," she said. "Then why is everyone freaking out?!!" God bless her, she made me feel so much better. Finally somebody told me that I was doing everything right, that it made more sense and was a good idea to stay put.
A little while later, maybe an hour, the lights came back on. I'm praying and hoping that they continue to stay on, and glad that the snow bit of this weather is over. Temperatures are dropping very low over the next couple of days, making me look forward to that promised high of 28 towards the end of this week.
Sunday, January 5, 2014
Friday, January 3, 2014
We Have To Go To The Store, Now
That was one of the first things my husband said to me when he got home from work today. Roo and I were standing there ("the welcome party" *snicker*), and there were no smooches, hugs or anything for us. It was all, "Get ready, I want to go before the crowds hit, blah, blah, blah.."
Okay, so I want to know what it looked like when the crowds hit, because Wal-Mart and Krogers were packed... Petsmart, not so much.. but WalMart and Krogers?? Oh my word! You'd have thought there was some sort of major Black Friday event going on, and it was only 4:00! I know snow is coming, but it's not supposed to hit until tomorrow night.
And people are rude! What has happened to us as a society that we think it's okay to give people the eye or storm off, or nearly run someone over with your Wally-Kart on purpose?!? If you're in that big of a hurry or someone is going too slow say, "Excuse Me".. You'd be amazed at how fast the waters will part. Sometimes. That's what I did. LOUDLY.
Poor Roo! She'd had enough of crowds and stores and was in that unreachable place, sobbing her eyes out, and all I wanted to do was leave. But there were so many people checking out, even at customer service, it was like a gridlock. We weaved our way through check outs & came to the main way. It was jam packed with lines to customer service. There I was, standing there, just me with a child in my cart, who was crying loudly, obviously not trying to get in line, and only ONE person towards the end of a line looked at me and tried to move to let me through. Unfortunately, even after that one, young person tried to move, our eyes met and we both knew that even if she did get out of line, there wasn't enough room for me to get by.. So what did I do? I started playing my own round of Wally-Kart. "EXCUSE ME. EXCUSE ME. COMING THROUGH. YEAH, WE JUST WANT TO GET THROUGH HERE. THANKS SO MUCH." And Bam! It's amazing how fast people suddenly notice you when your about to run them over, teeheehee..
Roo finished her meltdown in the car while daddy checked out inside. Eventually, she calmed down enough to ask for some tissues (in her own way), and I put in a favorite CD of hers. That really mellowed her out. I don't know if she heard me or not, but all I could tell her when we got in the car, mid-meltdown, was that I understood, and sometimes crowded stores upset me too. I'd like to think that she did, but probably not. On our way home, we treated her to McDonald's fries for supper--her favorite--because she was such a trooper.. And, lets face it, after such a stressful shopping spree, nobody was up to cooking. That was our big adventure of the day, shopping.. stocking up.. and surviving. ;)
Okay, so I want to know what it looked like when the crowds hit, because Wal-Mart and Krogers were packed... Petsmart, not so much.. but WalMart and Krogers?? Oh my word! You'd have thought there was some sort of major Black Friday event going on, and it was only 4:00! I know snow is coming, but it's not supposed to hit until tomorrow night.
And people are rude! What has happened to us as a society that we think it's okay to give people the eye or storm off, or nearly run someone over with your Wally-Kart on purpose?!? If you're in that big of a hurry or someone is going too slow say, "Excuse Me".. You'd be amazed at how fast the waters will part. Sometimes. That's what I did. LOUDLY.
Poor Roo! She'd had enough of crowds and stores and was in that unreachable place, sobbing her eyes out, and all I wanted to do was leave. But there were so many people checking out, even at customer service, it was like a gridlock. We weaved our way through check outs & came to the main way. It was jam packed with lines to customer service. There I was, standing there, just me with a child in my cart, who was crying loudly, obviously not trying to get in line, and only ONE person towards the end of a line looked at me and tried to move to let me through. Unfortunately, even after that one, young person tried to move, our eyes met and we both knew that even if she did get out of line, there wasn't enough room for me to get by.. So what did I do? I started playing my own round of Wally-Kart. "EXCUSE ME. EXCUSE ME. COMING THROUGH. YEAH, WE JUST WANT TO GET THROUGH HERE. THANKS SO MUCH." And Bam! It's amazing how fast people suddenly notice you when your about to run them over, teeheehee..
Roo finished her meltdown in the car while daddy checked out inside. Eventually, she calmed down enough to ask for some tissues (in her own way), and I put in a favorite CD of hers. That really mellowed her out. I don't know if she heard me or not, but all I could tell her when we got in the car, mid-meltdown, was that I understood, and sometimes crowded stores upset me too. I'd like to think that she did, but probably not. On our way home, we treated her to McDonald's fries for supper--her favorite--because she was such a trooper.. And, lets face it, after such a stressful shopping spree, nobody was up to cooking. That was our big adventure of the day, shopping.. stocking up.. and surviving. ;)
Thursday, January 2, 2014
Let it snow, Let it snow, Let it snow.......
Until Tuesday. Tuesday has to be nice so the little redhead can go back to school. :)) Last night it snowed about 5 inches, and we're expecting quite a bit more on Sunday with some daggum cold temperatures. One of my nephews decided to stay the night with us at my mom and dad's last night. It was kind of a last minute decision, and I wasn't sure how it was going to go. Roo is used to such strict bedtime schedule, that she's rarely up past 8, and I think he thought they were going to stay up late chasing each other & watching movies. I was so afraid he was going to be disappointed.
I really had to watch how I worded things with Roo, and head off any innocent errors that could have led to a meltdown. We didn't "go to bed," we "snuggled and read books" because "going to bed" is something that's done at home. It's a process that could in no way be something done at grandma's house, and Thank God the "snuggling and reading books" thing worked. And even though the tank running on empty is what put us out there, it was pretty awesome in the long run. After all the kiddos were finally in bed, I chatted with my momma for a long time and enjoyed the adult company. When we got up the next morning, Roo kept on spontaneously hugging me. Out of no where. Like, "Thanks, Mom, this is so much fun!" and that was really great, too. The kids played and had fun most of the morning and the roads were clear enough by 1 pm to take him home and run some errands.
My first thought when we ran out of propane on the first day of the new year was "Oh great, this is a awesome indicator of how this year is going to go," but later I realized that maybe it was more of a indicator of how good things are becoming and that, yes, there will be bumps along the way, but everything is going to be okay. Think about it.. We had space heaters, we had some place to go and a vehicle to get us there, and we were able to afford much more gas this time around and still have money left for food and other things afterwords. We are truly, so very, very blessed. <3
I really had to watch how I worded things with Roo, and head off any innocent errors that could have led to a meltdown. We didn't "go to bed," we "snuggled and read books" because "going to bed" is something that's done at home. It's a process that could in no way be something done at grandma's house, and Thank God the "snuggling and reading books" thing worked. And even though the tank running on empty is what put us out there, it was pretty awesome in the long run. After all the kiddos were finally in bed, I chatted with my momma for a long time and enjoyed the adult company. When we got up the next morning, Roo kept on spontaneously hugging me. Out of no where. Like, "Thanks, Mom, this is so much fun!" and that was really great, too. The kids played and had fun most of the morning and the roads were clear enough by 1 pm to take him home and run some errands.
My first thought when we ran out of propane on the first day of the new year was "Oh great, this is a awesome indicator of how this year is going to go," but later I realized that maybe it was more of a indicator of how good things are becoming and that, yes, there will be bumps along the way, but everything is going to be okay. Think about it.. We had space heaters, we had some place to go and a vehicle to get us there, and we were able to afford much more gas this time around and still have money left for food and other things afterwords. We are truly, so very, very blessed. <3
Wednesday, January 1, 2014
We Woke Up Cold....
This morning we woke up to the furnace trying to start over and over again. And it was cold.
"We're out of gas!" Terry hollered. "Poop," I thought and went to check the thermostat. It was at 63 so the furnace had only been struggling to heat the house for a couple of hours.
For those of you who haven't figured it out yet, we heat our house with propane gas. There's a big tank behind the house and we fill it up as needed. We were running low at the beginning of fall, but also low on funds. So, we only had a hundred gallons put in to get us by for awhile, & then we forgot about it.
This is how we started our new year--Cold & then Colder. Even after the space heaters got going, it was still chilly. I could have really used a shower this morning, but the thought of facing an icy bathroom afterwards drove all desire of that away. Not happening!
Roo was okay. She doesn't seem to mind the cold as much as we do, but allowing her to run around a chilly house seemed like a bad idea. She & I are constantly fighting off earaches and sinus infections lately, and the ever fluctuating weather is probably the culprit. So I plopped her in a chair by a space heater, stuck a hoodie & some fuzzy socks on her, and gave her the iPad. Tada! Problem solved.
Later we had dinner at my parents house (yummy lasagna & salad with rolls) to celebrate the New Year, and asked to stay the night & that's where we are now.. in a warm house, filled with leftovers, because the gas company charges an extra $150 to deliver on a holiday. My husband has decided to endure the cold at home though. He made several excuses.. anything from watching over the cat & the guinea pigs, to it would just be easier because I go to work in the morning, but you know what I think the real reason is? He doesn't want to share the guest bed with me and Roo. In a way I understand.... Even as I type this, she's laying sideways across a queen sized bed, hogging it.. But still, it's going to be cold tonight! I love him, but he's an idiot. :) I wish you all a Happy and Healthy New Year!
"We're out of gas!" Terry hollered. "Poop," I thought and went to check the thermostat. It was at 63 so the furnace had only been struggling to heat the house for a couple of hours.
For those of you who haven't figured it out yet, we heat our house with propane gas. There's a big tank behind the house and we fill it up as needed. We were running low at the beginning of fall, but also low on funds. So, we only had a hundred gallons put in to get us by for awhile, & then we forgot about it.
This is how we started our new year--Cold & then Colder. Even after the space heaters got going, it was still chilly. I could have really used a shower this morning, but the thought of facing an icy bathroom afterwards drove all desire of that away. Not happening!
Roo was okay. She doesn't seem to mind the cold as much as we do, but allowing her to run around a chilly house seemed like a bad idea. She & I are constantly fighting off earaches and sinus infections lately, and the ever fluctuating weather is probably the culprit. So I plopped her in a chair by a space heater, stuck a hoodie & some fuzzy socks on her, and gave her the iPad. Tada! Problem solved.
Later we had dinner at my parents house (yummy lasagna & salad with rolls) to celebrate the New Year, and asked to stay the night & that's where we are now.. in a warm house, filled with leftovers, because the gas company charges an extra $150 to deliver on a holiday. My husband has decided to endure the cold at home though. He made several excuses.. anything from watching over the cat & the guinea pigs, to it would just be easier because I go to work in the morning, but you know what I think the real reason is? He doesn't want to share the guest bed with me and Roo. In a way I understand.... Even as I type this, she's laying sideways across a queen sized bed, hogging it.. But still, it's going to be cold tonight! I love him, but he's an idiot. :) I wish you all a Happy and Healthy New Year!
Saturday, December 14, 2013
Pity is a Four Letter Word
Sometimes I regret not leaving this blog anonymous. I suppose that's the best way to start this off.
Pity.
I hate it. It's like a slap in the face.
Some people can live off of it. They eat it up. They tell you story after story of this and that.. and maybe they don't even realize it, but as soon as you start to show them some "poor you" response, they look relieved.
I'm not one of those people. I don't function well like that. If I'm telling story after story, I probably just need to get it off my chest, and I'm probably already a little bit down in the dumps. When the results are that people pity me, or give me that "look".. I feel a deep sinking feeling, and it just makes things worse.
Anytime someone lends a helping hand, I really appreciate it, but I appreciate it the most when it's spontaneous. When I don't have to ask for it? That's how I know someone really wants to help, and they're not just doing it because they feel like they should.
Maybe I'm not making myself clear..
Be my friend because you like me, not because I have a sick child & you feel bad for me.
Desert me because you don't like me, not because I have a sick child & it scares you.
Talk to me because you want to, not because it's expected of you.
Don't ever, ever pity me or my family.
And finally...
Associating yourself with my child doesn't make you a hero. Period.
(Last line inspired by this wonderful post.)
Pity.
I hate it. It's like a slap in the face.
Some people can live off of it. They eat it up. They tell you story after story of this and that.. and maybe they don't even realize it, but as soon as you start to show them some "poor you" response, they look relieved.
I'm not one of those people. I don't function well like that. If I'm telling story after story, I probably just need to get it off my chest, and I'm probably already a little bit down in the dumps. When the results are that people pity me, or give me that "look".. I feel a deep sinking feeling, and it just makes things worse.
Anytime someone lends a helping hand, I really appreciate it, but I appreciate it the most when it's spontaneous. When I don't have to ask for it? That's how I know someone really wants to help, and they're not just doing it because they feel like they should.
Maybe I'm not making myself clear..
Be my friend because you like me, not because I have a sick child & you feel bad for me.
Desert me because you don't like me, not because I have a sick child & it scares you.
Talk to me because you want to, not because it's expected of you.
Don't ever, ever pity me or my family.
And finally...
Associating yourself with my child doesn't make you a hero. Period.
(Last line inspired by this wonderful post.)
Sunday, November 10, 2013
Make-A-Wish Turned Us Down, & I'm Ok With That
If you happen to have liver disease, or you are a parent of someone with liver disease, or maybe you're just really close or involved with someone who has liver disease, there is a great group on Facebook called "Liver". Through this group I've come in contact with a great group of people who know what we're going through (or at least partially ;).
Some of the kids in this group are younger than mine and, as far as I know, have been through a lot less. I'm not downgrading their situation one bit either--a life-threatening condition is a life-threatening condition. So when they were actually granted wishes, and I am talking more than one non-transplant, not even listed yet child, I thought, "Huh...." and applied for Roo to get a wish. When I did, I knew it was a long-shot. Ironically, I had just spoken with her GI doctor at liver clinic about her liver's prognosis at this time, and she told me that it was good. Despite that, this particular doctor has known Roo the longest, so I thought I would apply with her listed first. (In case you don't know, the doctor(s) listed are applied to, and ultimately make the decision.)
Make-A-Wish said "No."
Am I devastated? Goodness no. There are plenty of children more sick than mine who will be granted a wish this year.
Am I embarrassed? Nope. With more hospital stays under our belts than I can keep track of, I had every right to apply.
How do I really feel about this? I guess it's kind of weird, but I went into this with the attitude of "If they say yes, that's great, & if they say no, that's great too, because that means she's too healthy to have a wish granted. Either way, we're blessed." And that's truly how I feel. Despite everything, I am blessed... So Very Blessed.
If you know of a child with a life-threatening condition, and would like to nominate them for a wish, click here: www.wish.org Good luck! :-)
Some of the kids in this group are younger than mine and, as far as I know, have been through a lot less. I'm not downgrading their situation one bit either--a life-threatening condition is a life-threatening condition. So when they were actually granted wishes, and I am talking more than one non-transplant, not even listed yet child, I thought, "Huh...." and applied for Roo to get a wish. When I did, I knew it was a long-shot. Ironically, I had just spoken with her GI doctor at liver clinic about her liver's prognosis at this time, and she told me that it was good. Despite that, this particular doctor has known Roo the longest, so I thought I would apply with her listed first. (In case you don't know, the doctor(s) listed are applied to, and ultimately make the decision.)
Make-A-Wish said "No."
Am I devastated? Goodness no. There are plenty of children more sick than mine who will be granted a wish this year.
Am I embarrassed? Nope. With more hospital stays under our belts than I can keep track of, I had every right to apply.
How do I really feel about this? I guess it's kind of weird, but I went into this with the attitude of "If they say yes, that's great, & if they say no, that's great too, because that means she's too healthy to have a wish granted. Either way, we're blessed." And that's truly how I feel. Despite everything, I am blessed... So Very Blessed.
If you know of a child with a life-threatening condition, and would like to nominate them for a wish, click here: www.wish.org Good luck! :-)
Saturday, November 9, 2013
Tantrums & Friends
I remember standing there, excited, nervous, so happy, yet scared... We were going home, really going home, and I told the Surgeon I had one last question.. "Wait," I said, "one more thing... If things hadn't gone the way they did.. If there hadn't been a bile leak, how long would our stay have been?" "Oh," she said, "..about a week." and she smiled at me. For a split second I froze. If there was ever a moment for a **That's not fair!!*** tantrum, it was then, but I didn't even realize it. We were inpatient for roughly 7 weeks. This was our second stay, and if I could go back and tell the second stay me one thing... I would hug me until it hurt to breathe, and then I would tell me that everything was going to be okay.
Now my sweetie is 7 years old. It seems crazy to have a child that old. If I wanted to, I could throw a tantrum every day. Not just for my daughter, but for all the other kids who deal with diseases and disabilities.What would it accomplish though? People always want someone to blame, someone to yell at, because it makes them feel better, but honestly, I just feel like.. this is life?? Nobody ever knows how it's going to play out, and no one is exempt from it's challenges.
One thing I have learned & cried over, is you will find out who your true friends are. The ones who visited you in the hospital (or had a really good reason if they didn't), the ones who text just to see how you're doing, and the ones who put a little bit of extra effort into dragging you out of the house when they know you're going through a tough time--those are your true friends. Sometimes Family is just a Friend in disguise.
I've also realized that being honest with myself will save me and others from a lot of disappointment. For instance, my house is dirty, I want to clean it (because I should), and I have a pile of fabric waiting to be turned into something incredible.. So I tell myself that if I hurry I will get everything shiny & sparkly and still have time to start a project... and then I feel so let down when the house is just cleanish (not sparkly) when Roo gets off the bus.. & I haven't started any projects.
So, just know that I want to be that awesome modern version of Mary Poppins, but I can't. That's not me. And Me is just learning to be honest with herself & with others about herself... and that's just something that everyone is going to have to get used to.
Lots of Love,
~Cassie
Now my sweetie is 7 years old. It seems crazy to have a child that old. If I wanted to, I could throw a tantrum every day. Not just for my daughter, but for all the other kids who deal with diseases and disabilities.What would it accomplish though? People always want someone to blame, someone to yell at, because it makes them feel better, but honestly, I just feel like.. this is life?? Nobody ever knows how it's going to play out, and no one is exempt from it's challenges.
One thing I have learned & cried over, is you will find out who your true friends are. The ones who visited you in the hospital (or had a really good reason if they didn't), the ones who text just to see how you're doing, and the ones who put a little bit of extra effort into dragging you out of the house when they know you're going through a tough time--those are your true friends. Sometimes Family is just a Friend in disguise.
I've also realized that being honest with myself will save me and others from a lot of disappointment. For instance, my house is dirty, I want to clean it (because I should), and I have a pile of fabric waiting to be turned into something incredible.. So I tell myself that if I hurry I will get everything shiny & sparkly and still have time to start a project... and then I feel so let down when the house is just cleanish (not sparkly) when Roo gets off the bus.. & I haven't started any projects.
So, just know that I want to be that awesome modern version of Mary Poppins, but I can't. That's not me. And Me is just learning to be honest with herself & with others about herself... and that's just something that everyone is going to have to get used to.
Lots of Love,
~Cassie
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